It was a simple outpatient procedure on Monday, July 24, to assess some airway and swallowing issues. Without going into excessive detail, the procedure seemed straightforward and my husband came home the same day with just the expected post-op soreness. But a couple of days after the procedure, his symptoms morphed from soreness in his throat and neck to less explicable symptoms such as numbness and tingling in his arms, which slowly traveled down his torso to his abdomen. His pain was increasing, despite changes and increases to his pain medications, and new symptoms such as the feelings of electrical shocks coursing through his body were emerging. An initial MRI of his spinal cord seven days after his procedure didn’t seem to indicate any problem there, besides the usual wear and tear of an aging, active body.

But his neurological symptoms continued to worsen and progress down his body to the point where he could no longer walk steadily or hold a cell phone up while lying in bed. This was now Wednesday, Aug 2, 10 days out from his initial procedure. A repeat MRI of his spinal cord still seemed ‘clear’ to the team, and an MRI of his brain ruled out any signs of a stroke. But his symptoms were, by this point, alarming. He spent a night in the ED and was admitted into the hospital Thursday, Aug 3.

By the grace of God, a physician friend who checked in with us, sensed something was amiss and needed timely intervention, and urged for a neurosurgery consult. That consult happened late Thursday night, prompting yet another MRI in greater detail which revealed the problem: an epidural abscess that had developed shockingly quickly, leading to intense swelling and severe compression on my husband’s spinal cord. None of the doctors can explain a clear path from the initial outpatient surgery to this abscess, except to say that the two seem linked. My husband was emergently whisked away to a larger hospital where he went in for emergent surgery first thing Friday morning, Aug 4, to wash out and decompress the infected area, and to have rods and screws placed in his spinal cord to stabilize it.

Going into surgery, he could barely use his arms or legs. Coming out from surgery, we had no idea how much function he would regain, if any. The neurosurgeon had no way of telling the extent of injury to his spinal cord, and whether it would be temporary or permanent. Only time would tell.

My husband spent five days recovering from surgery before he spent another three weeks in an acute rehab unit, relearning how to use his arms and legs, and regaining control over his bowel and bladder function. He was able to come home Aug 30, where he has continued to rehabilitate with home PT/OT and with his own diligent exercise routine.

He continues to struggle with deficits, but his recovery has been significant nonetheless. He has been able to go without his walker since about the end of September, and has been able to drive again. His arms remain the weakest part of his body, and he fatigues easily. It is difficult for him to keep his neck and shoulders straight without his neck muscles feeling quite sore. A posture corrector has helped provide some support there. He still experiences some numbness and tingling in his extremities, which we were told might be permanent.

This is the chronological / physiological story. But as with any story, especially one involving a medical crisis, we all know there are multiple layers to the experience. We’re still living in and unpacking it.

For now, what I will say is: 1) I have been utterly humbled by how difficult it is to be the family member (and then the caregiver) to someone in a medical crisis. I thought I had an idea of how difficult it is, but I really had no idea. 2) I find myself very much in the ‘both/and’ space. I am overwhelmedly thankful my husband got surgery just in the nick of time before he would’ve been permanently disabled or dead. I am also just barely beginning to feel and process my grief over how extraordinarily difficult this past year has been, now that the adrenaline of managing all the acute issues is wearing off. 3) I see the hugely concerning deficits in our healthcare system, as well as the breathtaking beauty in the people who cared for us within the chaos of this imperfect system.

This year has changed me forever as a nurse and as a human. I hope to continue unpacking and sharing the experiences and lessons with you all here in future posts. We have so much to learn, and so much to give, to our patients and their families.